WBOY has a series of reports on autism in West Virginia, a year after the state enacted an insurance mandate.
There have been significant strides in autism treatment in West Virginia over the last year, but there is a long road ahead for autistic children and the services needed to treat them.
Gov. Earl Ray Tomblin signed West Virginia's Autism Insurance Reform Law(HB 2693) April 2, 2012 at West Virginia University's Center for Excellence in Disabilities. It has a small Intensive Autism Service Delivery Clinic, which serves five children.
Tristan and Autumn Hinebaugh are twins who receive hours of one on one instruction at the clinic.
The law provides up to $30,000 a year for necessary treatment of children for up to three years. After that, the benefit reduces to $2,000 a year until they are 18 years old. The child must be diagnosed before they turn 8 years old.
There are gaps in the coverage, though. Only businesses with more than 25 employees are compelled to offer the coverage, excluding self-insured companies. That means only 23 percent of children in West Virginia are covered by the new law.
That leaves almost 75 percent without access to the treatment Tristan and Autumn receive, or their results.Part Two:
We have a waiting list that we've quit taking names for because the children age out," said Dr. Susannah Poe, the director of the clinic. "They're 6 and 7 before we even have an opportunity to bring them in and it breaks our hearts."
If it weren't for the clinic, the Hinebaughs couldn't afford the care they receive. Tina said her employer is self-insured and so is not a part of the autism law. That means Tristan and Autumn are not covered.
Dr. Poe estimates that more than 75 percent of West Virginia children are in the same situation, blocked from funding for this type of treatment and its results.
"There has not been one child who has not made remarkable, affirming, progress," Dr. Poe said of the treatment at the clinic.
Of the estimated 23 percent of children who are covered, they still face difficulties gaining access to treatment. Dr. Poe said there are only 40 Board Certified Behavior Analysts (BCBA), like Emily Morris, in the entire state.Part Three
At West Virginia University's Center for Excellence in Disabilities, it's not hard to find students or volunteers willing to work with autistic children, like Tristan and Autumn Hinebaugh.
"To the point where they come in as students, and then they stay another year," said Dr. Susannah Poe, the director of the autism clinic. "Once you do this work, it's hard to walk away from it. There's not too much that's more rewarding."
The students, volunteers, and basically anyone who works with the children light up whenever they see or talk about them.
"They are extremely fun, wonderful kids," mom Tina Hinebaugh said. "They're a child first. They just happen to be autistic."
The clinic is a training ground for WVU's applied behavioral analysis program, but there hasn't been a market for their skills until now.
"We don't tend to retain a lot of the students who graduate from our university because they can't get jobs here," said Emily Harris, a Board Certified Behavioral Analyst (BCBA) and WVU graduate.